Eating My Words

I believe it was the last blog post in which I said something like I didn’t believe that my creatinine would get down to 1.4 as the doctor would like. I mean, 1.4 is the high end of normal. I’m not going to get back down to normal.

WELL, I WAS WRONG. And happily so. Last week it was 1.4, and today it was 1.3!! Once again I was in shock. (Except to say that the myChart thing now says the high end of normal is 1.2. Seriously, it was 1.4 before. They’re fucking with me.)

If I understand this correctly, and there’s every chance I don’t, this means that my kidney’s filter function has improved. The creatinine is better able to leave the bloodstream through the kidneys. And this just dawned on me tonight… I wonder why creatinine is the “gold standard” by which kidney function is measured. I mean, the kidneys filter pretty much everything so why creatinine specifically? I imagine that it’s because creatinine is easily measurable and maybe also due to its molecule size compared to the size of the filters of the kidneys? I don’t know. I’m purely guessing. Obviously, they can measure many other things, protein and BUN, for example, but it’s the creatinine that provides the GFR. Interesting. I always say I’m going to investigate these things, but let’s be honest: there are dog videos, cooking videos (I never cook), and sheep-shearing videos on Facebook. I don’t have time for researching creatinine molecule sizes.

The bottom line is, my GFR last week was 40, and this week it was 44. That’s pretty amazing because last November it was something like 13, and they were sending me to the dialysis nurse. 44%? I’ll take it. I don’t believe I’m scheduled to do another 24-hour urine collection until September. It will be very interesting to see if the protein has dropped given the improvement in the GFR.

My hemoglobin was 9.3 both last week and this week. I was hoping to see an improvement this week since I got the Aranesp last week, but no such luck.

Dr. T repeated my thyroid labs last week. Now I think I’m just very slightly on the hyperthyroid side of things. But in the past, that’s where my endocrinologist wanted me. I believe this is the thing that’s supposed to suppress the recurrence of cancer. It also helps provide a little more energy, which god knows I need.

But I’ve also been too far into hyperthyroid territory… not good. Your hair falls out.  I’d like to avoid that since mine is barely trying to grow back in.

Last week was a long week with lots of driving. Monday was a 12-hour day, Tuesday a 14-hour day. I was off Wednesday except for the quick little 4.5-hour jaunt up to Colorado. Then Thursday after clinic, I had to make the return drive home and got home about 9:00 PM. And a meeting Friday at 8:30 so no sleeping in on my day off. But I managed to get through it. Then yesterday was a fairly easy day, got home at 5:30, and I was completely exhausted. I had to take a two-hour-plus nap, and I still went to bed about 10:00. There’s just no rhyme or reason to when the fatigue hits full force. Makes it hard to plan for stuff, that’s for sure.

I’ve been very pleased with the lack of swelling in my ankles and feet. When I have to take a long drive to clinic (3.5 – 4.5 hours), I deliberately don’t wear compression socks just to see what will happen. And so far, nothing has happened. My feet and ankles just look like feet and ankles upon arrival. Thank goodness.

I still have neuropathy in my feet. I can’t say at this point that it’s gotten any better. I definitely notice it more at night and more so when my feet AREN’T bound up in compression socks. So for the last few nights I’ve been sleeping in compression ‘sleeves,’ the ones that are open at the tops of my toes and just come up to mid-calf. I can’t say that it’s making a huge difference but I’ll keep trying. Maybe I’m just too busy during the day to really notice it. I don’t know. It’s such a weird combination of sensations: numbness, pain, burning, sharp pricks, electrical shocks. It’s a party. I’ve read conflicting information on how long it can take for it to go away (IF it’s going to go away) but it can be up to 6 – 8 months post-Velcade cessation. So… maybe by the end of the year?? Hopefully.

My blood pressure is still high. As I messaged to Rose tonight, it would be SO awesome if everything would trend in the right direction for a bit. But my BP is not on board with this plan, apparently. Last week I emailed Dr. T and asked what he thought of the idea of going back on lisinopril. If my creatinine increases, then we’ll know what the culprit is, and I can stop taking it. I wanted to go on 40 mg but he agreed to 20 mg to start. (Prior to all this mess, up until last June, I was only on 20 mg lisinopril, and my BP was beautiful.) I believe I started that this past weekend. So far, I my BP hasn’t improved much but it can take some time. I’ll stay on 20 mg for the next week, and if it’s still high I’m upping my dose to 40 mg and telling him about it after! He would like to put me on amlodipine, which I’ve been on before. (Is there a BP med I HAVEN’T been on over the past year??) The problem with amlodipine is that it can cause swelling, so I’d rather not. BUT… I was on a solid shit-ton of meds during the time I had all that swelling so it certainly may not have been the amlodipine. But I really hope the lisinopril kicks in and doesn’t raise my creatinine, and I can just stay on that. I was glad he was at least agreeable to the plan.

Today when I was in the oncology lab, the doc popped in, and I told him my creatinine was 1.3. He just started laughing. That cracked the nurse up. She didn’t quite know what to think.  I think he’s just pleased that his little “experiment” is working. I’m pleased too of course. But that has to be pretty cool for him since he’s never dealt with this before and likely never will again. I see him again in September, and hopefully I’ll have a better idea of what the plan is. My guess is that maybe we’ll start reducing the dose of the Kyprolis and see how I respond? I’m pretty sure I’m getting 10 mg now, and I just asked my on-call oncology nurse Rose if it comes in smaller doses than that, and she said yep. But I’m completely guessing. And maybe he’ll be guessing too.  I believe I see my Pennsylvania nephrologist before I see him, so I imagine she’ll have some input as well.

I also told him today my hemoglobin was still low. He asked the nurse, “She’s getting EPO, right?” [EPO = erythropoietin = Aranesp.] “Yep.” “What dose?” She started to look it up but of course I already knew the answer. “225 mcg.” He said at about the same time, “She’s not getting 500 is she?” Holy crap no. I believe that’s the max dose. He said, “We can always give you more drugs!!” I said, “Yes, I’m well aware. But I’d prefer not to just jump from 225 to 500. Let’s work our way up there.” I mean, blood clots and all. But I think he was mostly joking.

There are three nurses who work with me the most at the lab. They’re all great. Interestingly, they all place the IV for the infusion in different locations in my arm. I think this is actually a good thing so that one area of my arm isn’t always the victim. But the nurse today has tried on at least two prior occasions to put the IV in the lower part of my arm closer to my hand, and each time it’s been unsuccessful, so she just puts it in my hand. Same issue today. I think next time I’ll just tell her to use my hand. Surely she can’t remember who does better where with all the patients she sees. The other nurse inserts it in my arm just below my elbow, and the third nurse uses the underneath side of my arm—that pasty white area. Ha. No location hurts more that the other, and it doesn’t really hurt much at all. But I will say that the underneath side of my arm leaves a really pretty and long-lasting bruise.

It is a long process though. Most of the time I’m there for two or more hours. This generally isn’t a problem (and I know other patients are there far longer), but it’s hard on a day like today when I have to follow up the appointment with a three-and-a-half-hour drive for clinic tomorrow. This time of year, it’s not so bad since it’s light so late and of course no snow to complicate things.  Winter will be a different story. But I have a few more months before I have to worry about that.

On the upside, I’ve booked a trip to the far reaches of Northern California in the fall to see Nurse Extraordinaire Rose and our other friend Humboldt Hippie Extraordinaire Susie. The last time I saw them was literally—LITERALLY—the weekend before the pandemic hit full force, and everything shut down. My last clinic was the day after I got back from that trip. So bizarre.  

I considered driving to Oakland to meet up with Rose so I could spare myself being trapped on a plane with everyone’s germs, but I just can’t do that. It will just wipe me out.  Instead, I booked a first-class trip (don’t get all worked up. It’s only a two-hour flight, so a first-class trip isn’t that expensive. I’m no bougie chick. I’m sure they’ll look me up and down in my thrift store jeans and flip flops and ask if I’m in the right section). And since the plane is pretty small, there is one seat alone on one side and two seats on the other, so of course I booked the single seat. That, my double mask (one of which will be an N-95), and my avoidance of people in general should serve me well. And we’re going up to Humboldt County—small population, small number of COVID cases, although they’ve ticked upwards lately, like everywhere else. But still, relatively speaking, it’s a far less risky area than most.

I’m not being paranoid—I have no immune system, yo. I don’t want to catch anything people may be bringing with them. And if shit starts getting worse between now and then (COVID-wise), we’ll just cancel the trip. No big deal. Except I won’t get to pick up food from El Pollo Loco. And that would be tragic.

Hemoglobin: 9.3
Creatinine: 1.3
eGFR: 44

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